So glad I found you all

[kimski30]

Hiya,  I have 3 children and Jake my 3rd , I am pretty sure has Fructose Malabsorption.  He is 15 months old.  I haven't had a chance to read everything on here yet but am so glad to see other people going through the same. (not that you are I'll but that finally I may have some help)
I am currently waiting for a peads appt (which can take 4-6 weeks). The doc said I should take all fructose out the diet however I do not feel safe doing this without a dietician. I have gone to a basic as poss diet and am slowly introducing thing. I have already determined he can't have onions, tomatoes, sorbitol and dairy milk and I think soya milk upset him and I know he is ok with bananas but am finding it a complete minefield and feel I have been left just to get on with it. Have you managed to have the hydrogen test?
Once again am so glad to have found you and looking forward to reading the posts xx

[Charlie Arnold]

Hi and welcome. I am glad you have found us, hopefully we can help steer you through the minefield that is sugar malabsorptions. When you have time fill us in on more of Jakes history eg when everything started and a full list of symptoms as it may ring some specific bells with others on here.

[kimski30]

Thank you. Well I will try to be as brief but informative as possible as I always tend to waffle on lol. I have always felt that Jake was uncomfortable from birth, very squirmy/colicky after bottles and then when I started to wean him it went from bad to worse. Every time I gave him a food, his symptoms got worse and it felt like he was reacting to every food to the point where I didn't know what he was actually reacting to. (bad weaning on my part but to begin with nothing seemed out of the ordinary, just put it down to being a baby). I took him off Dairy milk at 1 as I felt it was this that was causing the probs after a couple of vomiting episodes after consuming alot of milk. I put him on Soya but the one that he should be on (+1) is full of fructose. He was then given (by my husbands nan who was babysitting (1st time i'd been out since he was born!)apple flavoured water (containing sorbitol) and wotsits (containing milk and more) and he was very sick. This led me to looking at things he ate, what they contained and fructose was the common ingredient. It all sounds very vague I know but I have just known from day 1 something is not right. He has never slept through the night (uncomfortable), he had a very swollen belly (gone down since going to a basic diet) screaming in pain at night, going from sticky poo to solid in the same day,never ever burps, hardly ever blows off (which causes pain) insomnia (just lays in bed staring in to space yet so tired. I also believe he gets headaches as he holds his head alot but because of his age, I can't be sure. He also seems to have a problem with Fractans as much as I can understand anyway. He reacts badly to Tomatoes, onions and pasta for sure and then I think garlic and some veg but as i'm doing one thing at a time I don't know as yet.
So basically I have him on Gluten free stuff, he now drinks almond milk, am testing lactofree cheese at the moment (no sleep for me tonight probably!). I know bananas are safe and I think broccoli is ok but I feel so out of depth with all the things I need to test. I am waiting for a peadiatrician appt but have been told 4-6 weeks wait and the docs have said that they will prob want me to see a dietician first!. I don't mind cooking from scratch and buying special ingredients but I am just finding the whole not knowing what to avoid etc the hardest part. I hope I have explained a bit better and would really appreciate any feedback xx

[Charlie Arnold]

Hi, yes good information to start us off.

Definately a food related problem then, classic history that it all starts when you start weaning. From his symptoms it sounds like it could be many problems and herein lies your biggest problem. I am not a doctor I must stress but am an Osteopath so as part of my training did alot of basic medicine. I have also researched this subject extensively to get answers for Megs.

It could be fructose malabsorption where the fructose cannot get absorbed properly through his bowel wall and certainly his symptoms tick the boxes. Diagnosis is usually made by a fructose challenge hydrogen breath test but that is hard to do when they are young as they have to blow into a machine or bag. Kate may be able to help you there as her daughter was diagnosed very young.

It could also be Hereditary Fructose Intolerance which is where the liver cannot cope with fructose as it is missing an essential enzyme called Aldolase B. Now sometimes it is safer to eliminate this first if they are reacting very badly to fructose as the reaction to fructose can be more dangerous so better to eliminate first before giving a fructose load. Addenbrookes Hospital in Cambridge do the DNA test for this so we got blood sent there last year. Treatment if positive is then as completely fructose free diet as possible. A good proboard for this is www.hfiinfo.proboards.com, you'll find most of us on there too. They may also do liver blood readings which may give an indication of this.

He could be reacting to sucrose though as most things that have fructose in them also have sucrose and they can also then have a problem with starches and lactose. This is where we are headed with Megs at the moment as even on a fructose free (and I was obsessive about it) she still had problems. Look up www.csidinfo.com for more on that.

So that should have your head reeling by now, hopefully not too much but it will give you a picture of what may need looking at.

One word of warning (apologies to all dietitians in advance) but they really don't know much about this subject. I was told originally that veg were fine, oh and bananas, but they really weren't for and for most FM kids. Trouble is, you have to work your way through the system........ The Epsom hospital we were under admitted they didn't know anything else about it other than what was written on the sheet of paper they gave me.

A few of us are wondering about the diagnostic procedure and its accuracy with these kids. To get an accurate fructose challenge result they may need to be reactive at the time but obviously as a parent you don't want your kid any more ill than they have to be. Our consultant did listen to my concerns though after I did an elimination diet on Megs and she clearly started reacting as soon as she had veg and sugar, never mind starting on the fruit so you may find your best early option is the elimination diet and you have just galvanised me into action to write a better format for fructose malabsorption detection. I've been meaning to do it for ages.......

Why do you need a diagnosis, well obviously so you know what to feed him and incase he ever needs medical treatment for anything else. Also schools like a definate diagnosis written on NHS paper, and family will take more note too. It is also good to eliminate HFI as they must be fructose free for this although there is no medication. If FM then there is a slightly less restrictive diet but again to medication, however if it is sucose intolerance then they can replace the enzymes that are missing and they can then eat alot more foods.

BTW you are in good company, as you can see, we all waffle, hope this info has helped.

Your best starting point if you want to clear his system is to put him on meats and fish and egg to start with, then try white rice. This may show if he has a problem with starch . If he is ok use something like chicken and rice as your safe fallback food during your diagnosis. I always use this whenever Meg has a reaction to help settle her system. Do this for at least 4 days, make sure the meat is as good quality as possible and untreated, alot of the cheap meats especially chicken and pork are injected with sugar water....... When they are small they seem to react to the slightest little bit of something.

Right, enough info to start you off, hope this has helped. Will go and start on the elimation diet.

[kate]

Hi Jake's mum.

Having read your story you have my utter sympathies. It is unbelievably similar to that of my daughter, Jyoti, who is now 2 and a half. Those of us with fructose/sugar intolerant children who use this site have all been in your situation and fully understand how challenging, frustrating and time consuming it can be to look after a child with the condition.

Jyoti has had no formal diagnostic tests for FM. The gastro doctor we were referred to for a hydrogen breath test said that the test wasn't very reliable and wouldn't do it. She had a genetic blood test for HFI at my request as I felt uncomfortable repeatedly challenging her with fructose without knowing for certain that she didn't have HFI.

I agree with all that Charlie has written. Jyoti is absolutely safe on white rice, meat, spinach, mushrooms. Her diet is more extensive than that but that would be a safe place to start.

[kimski30]

Hiya, I'm back!! Firstly sorry for the long delay. I moved house and to be honest with about 2 hrs sleep a night I felt like a complete Zombie. I wanted to come back to update so far for anyone else who may be struggling and look this up.

So after the basic diet I was convinced I had cracked it and thought it was dairy, Soya and wheat intolerance but then he was reacting to oats, free from pasta etc and I couldn't understand it. The dietician I saw was useless and put him on Neocate ( he's 21 months) which made him really sick. I went to docs again who said he had reflux and prescribed omprezepol (can't spell it) any way he had am awful reaction... As in I've never seen him looking so ill. Checked ingredients and in medicine and milk and they contain malto something and sucrose. Anyway to cut a long story short all the foods he reacts to contain Sucrose but he also reacts to grains which led me to Maltose and then I realise that he most likely has CSID. Which I believe Charlie you did mention to me originally but I dont think at that point I knew which foods he was reacting to whereas now I know they all fit like a puzzle.

So now I know this we tested him last night removed as much sugar as poss but still leaving some and hey presto he slept through until 9.50 am.... Jake has NEVER slept that much in his life. He is like a new boy. I now have to speak to my dietician to see what she says (not holding out much hope) and also I have a paediatrician appt in Jan (yes I have been waiting that long). So maybe finally we can start getting tested. I hope your children are all doing well now and mostly to anyone struggling to find answers I send you all my best wishes and hope you find them because this has been bloody hard work xxx

[Charlie Arnold]

Hi Kim, great to hear from you, oh boy, yes, sleep deprivation is bad enough but to try and move house and function as a normal human being is just impossible. Which hospital and consultant are you under? I can completely understand how frustratingly slow they are at getting on with these things so your observations on him will be your best guide while you wait and the fact that he slept is a good indicator. Before you go for your appointment make a clear diary for a few weeks as if you are anything like me you will get into the room, he will start screaming and whining, you will completely forget what you are going to say and you won't get anywhere. Write every symptom down and give them a copy, it took me years to work out to do that but it was the best thing to do as I always forgot something important till I got home.

When I have time over the next few days I will email you some links to safe foods and starter foods to try for the CSID diet.

Having started it for Megs it is definately the way forward but low starch is the hardest. The good news there is that as they get bigger and older the reactions get far less dramatic. Megs is now 11 but when I think back to those exhausting and stressful toddler days when she would be screaming in pain, exploding at both ends, going floppy and grey and no sleep night after night after night if anyone had told me that it would improve I wouldn't have believed them, but once you get on the right track it will improve dramatically.

One trick to try early is white rice, boil the rice for 10 minutes then rinse it several times through with boiling water as that rinses excess starch out. Meg seems much better on it when done that way.

Good luck, keep us posted.

[kimski30]

We are under Dr Kabole at Worthing Hospital. She is the allergy paediatrician so not sure whether she'll know much about this.

Thanks any help is greatly appreciated, especially the grains bit as I can't really find much info on that.

Charlie it's so lovely to hear that Megan is doing well and that it does get better as it just seems to have taken over the last 2 years of my life lol.... All I think about it food and cooking. Did she get diagnosed by tests for CSID or did they just agree as she improved through diet (if you get what I mean?).

I will def take your advice and write it all down as I go to appointments very determined to tell them what's what, they say one word to me and I turn to mush lol.

Will keep going with the diet and let you know how I get on with the paediatrician on 3rd Jan xxx